Epilepsy Talk

Bullied Because of Epilepsy | June 28, 2017

Like lions, they smell the difference…

Like hawks, they sweep down on you…

And like hyenas, they laugh and eat your heart out.

I guess Robert Drucker never heard the saying “don’t hit a man when he’s down.” Because even though I wasn’t a man, I was surely down on the ground with a seizure. Lend me a hand to get up? Hell no. He kicked me in the face and broke my nose.

But no pity parties here. I’m sure you’re not new to the bullying game. Where ignorance rules and mean is cool.  Just ask:

Paul, taunted as the “seizure boy” throughout school…

Gemma, gang raped by three boys as a teen…

Troy, whose (former) best friend beat him up…

Sarah, mugged by a man pretending to be her date while she was seizing…

Olivia, whose classmates called her “retard” and dragged her backpack through mud…

Jonathan’s teacher didn’t believe he was having a seizure and pulled the chair from under him, just to see if it was “real”…

Chris’ parents threatened him with a vasectomy, if he dared to have another child…

Tim was repeatedly beat by the police, who accused him of being high on cocaine…

Corinne committed suicide at 13, after her (former) best friends taunted her for two years and finally told her “You should just die”

And at a State Hospital in Michigan, when Mike had a seizure, they would lock him in the seclusion room. If he had another seizure there, a nurse or attendant would come in and slap him or literally “belt him”, where nobody could see…

I’m sure you have your own story too. Will you tell it or stay silent, as so many victims do?

 

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References:

http://epilepsyassociation.com/epilepsy-patients-tell-of-horrific-bullying/

http://talkaboutitorg.ning.com/profiles/blogs/bullying-has-to-stop-we-have-to-help

http://www.ncbi.nlm.nih.gov/pubmed/19631586

http://www.aboutkidshealth.ca/en/resourcecentres/epilepsy/athomeandatschool/epilepsyandqualityoflife/pages/epilepsy-and-social-adaptation.aspx

http://my.epilepsy.com/node/969952

http://www.ct-ea.org/personalstories.html

http://www.healingwell.com/community/default.aspx?f=23&m=2429218

http://www.epilepsyfoundation.org/give/paulrothbein.cfm

http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/backtoschool.cfm

http://www.ncype.org.uk/all-about-epilepsy/your-stories/11279-jonathan-solomon-story


24 Comments »

  1. Yes grandmal had jewelry stolen lost my home blacked out ex-husband sign this lost my mother estate and more …. asked the Epilepsy Foundation for help with leagle (none) long road sad when a foundation doesn’t help yes I have a lawyer yes one outher lawyer wants the case. Facts TBI caused Refractory epilepsy foundation should had given help.

    Like

    Comment by judyjudy01985 — June 28, 2017 @ 4:13 PM

  2. I read these and I don’t know whether to scream or cry. People are so ignorant sometimes about seizures. I would love to go out and spread the word, but people only believe what they want. To anyone who doesn’t understand please listen and read all you can about seizures. I hope this opens some eyes.

    Like

    Comment by Gwen — June 28, 2017 @ 4:43 PM

    • When you’re completely incapacitated and you’re not capable of doing anything people take severe advantage of you whether it be sexual or many other ways but they do

      Like

      Comment by judyjudy01985 — June 28, 2017 @ 4:46 PM

    • Sorry I just read that if I am mistaken and that’s meant towards me please feel free to contact me I may be mistakenly reading this wrong

      Like

      Comment by judyjudy01985 — June 28, 2017 @ 6:26 PM

  3. My granddaughter was bullied by three girls,they pushed her to the ground and hit her and dragged by her hair. Im still upset about this she is 12 yrs old. Can we press charges on these girls or what can we do

    Like

    Comment by irma De La Rosa — June 28, 2017 @ 5:08 PM

  4. After last aneurysm surgery when a clor developed in a vessel in my head, I was aphasic and could not speak!

    Doc gave me a clot buster jab just in time so was able to speak straight away but with a stammer which is still there although much less pronounced.

    Went back to work just 9 weeks In hospital and was witch hunted out of my job as a radiographer by a cretin manager who maintained i was “using my underlying health problems to deceive my colleagues” , and therefore untrustworthy and not of good character. 23 years service and bullied out of my job because I was an easy target.

    Like

    Comment by Stephen — June 28, 2017 @ 5:27 PM

  5. yes I hate it when people look at me when thay think I am just making it up

    Like

    Comment by pooterbear — June 28, 2017 @ 5:29 PM

    • I understand that just ignore move on fact is that we didn’t wave are arms screaming yes I want that be strong and struggle threw …. it’s not easy I know that I have refractory epilepsy my meds changed all the time medical marijuana oil works great for me don’t get stoned each person has there own thoughts My pills dropping
      I had VNS done then it was shut off went set to find out neuro pace was not able to be done …. came to terms life changed and I can’t fix it take my meds live in aid no more cooking driving life changed

      Like

      Comment by judyjudy01985 — June 28, 2017 @ 5:38 PM

      • However, Judy you’ve shown so much courage, despite what you’ve gone through.

        You are a truly a person to be admired.

        Like

        Comment by Phylis Feiner Johnson — June 28, 2017 @ 6:01 PM

      • No just paperwork kept lawyers i’ve been a very strong not for my self fact my mother’s head stone never engraved since her death Gaurdin 1993 funds for my children’s education gone I never knew I had a tbi thought I had dyslexia you don’t give up when it comes to your children now grandchildren My past donating K9’s for those that needed them battered women and children being seen on the Boston TV back in 2000 we donated so many K9’s I helped people the service dogs I won’t give up until the judge tells me to … you don’t know somebody’s life Unless you walked in their shoes is so true abuse bullying is what most go threw we just have to be able to have voices if able stand up Fight back (I am) but I’ve like most have had experiences that I will not mention because it’s embarrassing us face it blacking out passed out childhood picked on why parents don’t teach what is going on yes parents are held for there children and there actions speaking calmly explaining hopefully those children will be sat down and taught and apologize directly to you and you have some God bless you for surviving apologize directly to you and so many more who have stories on here I read want to say something thankgod your alive every morning I thank god I wake up we all should have some thought who we are thankful for the bullying look at it this way … rude uneducated Obviously no manners Never mind what else they’re lacking If you’re able to confront without getting hurt do so If you can report them do so if they’re that much of a problem to get a restraining order I’m done being walked on everybody should be nobody has a right to abuse th if you can report them do so if they’re that much of a problem to get a restraining order I’m done being walked on everybody should be nobody has a right to abuse us !!!! Hurt steal laws to protect please use them and keep your self safe and your family and loved ones

        Like

        Comment by judyjudy01985 — June 28, 2017 @ 6:21 PM

  6. BRAVO to you Judy. Beautifully and forcefully said. You’re an inspiration to us all.

    Like

    Comment by Phylis Feiner Johnson — June 28, 2017 @ 6:32 PM

    • Thank you …. I always say it’s respect for my mother my children tenacity because I was never told the truth they knew I had Epilepsy why wasn’t I told that I have a brain injury It took a long time to get where I was in Life Joy 100% to illness unexplained I am thankful for my Neurologist who explained everything then sent a socail worker I was in capable of comprehending wrong medications from Brigham and women’s hospital in Boston who was trained by my dyslexia dr funny he thought I had autism I had to learn to dig deep the strong came out Folks….. be strong maybe get a group set up meetings I wish I could but I’m in no mans land in maine please be kind help each outher fact is no one understands this well reach out give a hand kindness doesn’t cost a thing I hope god will bless each and every one of you with love kindness and strength then when your depressed you will say ok I’m going to rest get back up and say I Can Do This!!!!! You will Never ever give up is all struggling is part of life meeting those who understand helped me I bet would help each one of you support system ✌️

      Like

      Comment by judyjudy01985 — June 28, 2017 @ 7:05 PM

      • Strength and kindness are definitely the operative words. In feelings, actions, and dealings with others.

        And sometimes, forgiveness needs to be added too.

        (My parents never said the “E” word and they treated me like a pariah. To this day, my mother will never admit I had epilepsy.)

        Like

        Comment by Phylis Feiner Johnson — June 28, 2017 @ 8:01 PM

  7. When in school I was picked on,,BULLY wasn’t a real word then,but I knew who they were, when the school learned of my seizures. All grades then went DOWN when O felt like school became a prison, where kids wanted to pick fights & etc.. When the fights happened, I did not lose, some were draws, but most were wins & they never tried to approach me again after they lost to somebody with seizures. They had the LOSER LABEL on them, and it all stopped. I said this so you all need to stand up against the people who are so arrogant & stupid, who put you down, knowing that they all have missing brain cells where we have all of ours. People today do not seem to be as ready to attack me because of seizures, yet I do not get out in the public scene much to find out who would reject me when I seizure can happen other than home. My bowling friends at the bowling alley where I bowl knows me well & sees I am okay, when a seizure may happen there, as only 2 times in 23 years bowling there it has happened, & someone there took me home living 19 miles away. The owner of the center though will not have any bowling charity tournament where I say we all could STRIKE OUT EPILEPSY, when we could get people to sponsor such a tournament & donate so many cents for each pin score a person bowls. 200 game at a .05 a pin rate could be $10.00, or 5.00 for a 100 game. You get the idea as many other bowlers & people will not give much to support our cause for a cure or healing for seizures.

    Like

    Comment by C D — June 28, 2017 @ 8:57 PM

    • Oh C D. What a brilliant concept. Strike out epilepsy. You’ve got to do something with it somewhere.

      You’re strong and innovative, I bet you could.

      If not bowling, how about trying other sports, like baseball teams. (A banner on a minor league wall? Home run contributions? I don’t know, I’m not as clever as you.)

      Even a banner at the bowling alley. That’s something better than nothing.

      But I know, you’re not one to compromise.

      Like

      Comment by Phylis Feiner Johnson — June 28, 2017 @ 9:13 PM

  8. Some more subtle bullying:
    A Neurologist who “sees no reasons for seizures” and secretly tells your husband “it’s nerves”
    Scared and traumatized, the same Neuro dismisses your thoughts about counseling for those with seizures stating “not enough would go.”
    Therapists are wary of those with seizures and only rec. meds.
    Another Neur laughs about my hair loss from meds pointing to own balding head.
    Having to try 2 times for disability transit approval with them having stated “you can just walk to the bus.”
    Skyrocketing health insurance for self-employed
    The PTA mom who’s staring a my hand tremors and speech problems ( do I tell her/them and stigmatized my kids throughout school?”
    To be continued…………

    Like

    Comment by skolly9 — June 29, 2017 @ 7:35 PM

    • Oh Scolly.

      You might appreciate this:

      Ode to a Doctor’s Visit…

      They forget that we live 365 days or 8,760 hours a year with our illness…

      We see them for four 30 minute visits or 2 hours in that year while we’re struggling…

      We spend time planning in anticipation of this precious, important moment…

      We invest hope and sometimes fear into the event…

      We have often orchestrated endless tests and other Doctors’ assessments in order that instruments will be tuned to perfection…

      that they might render us an orchestral visit…

      The Doctor will listen to us as we have observed our condition relentlessly and respond with the respect due, to the information we offer and know what is needed…

      That is what we ask.

      By Sally Komar

      Like

      Comment by Phylis Feiner Johnson — June 29, 2017 @ 7:40 PM

  9. By all means. People not afflicted with the problem do call persons with the problem all the things you mentioned; When teams were formed, I was always the last to be chosen due to poor coordination. Left out of activities because of how I did not respond when having a bad moment. I’ve always said I should be the proud inventor of a little ‘machine’- hook it up to anyone without the problem, i.e. teachers, friends, family members, team captains- you name it. Press the ‘magic button’ and make them experience having one, and for us to continually ask them questions, etc. Ha. Maybe they could learn our feelings that way.

    Like

    Comment by Karen — June 29, 2017 @ 8:14 PM

    • There’s a Janis Ian line about “being last to be picked for basketball”.

      Like you I was the last to be chosen or not chosen at all. Literally and figuratively sitting on the bench.

      In fact, I felt like I was “benched” for a lot of my younger life.

      It was cruel and I cried a lot.

      And I wished someone could sit or walk in my place for just one day.

      Like

      Comment by Phylis Feiner Johnson — June 29, 2017 @ 10:03 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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